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Ethical, Legal and Social Implications Program Reports

Reports from the Ethical, Legal and Social Implications (ELSI) Research Program

ELSI Research Program ELSI Planning and Evaluation History ELSI  Abstracts and Activities Database ELSI Publications & Products ELSI Program Reports

• Genetic Testing
• Genetic Discrimination and Health Insurance
• Issues Related to the Conduct of Genetic Research
• Underrepresented Minorities
• Specific Research Topics
• Program Reviews

Genetic Testing

• Follow-up Workshop to the Consensus Development Conference on Genetic Testing for CF (10/97)
• Promoting Safe and Effective Genetic Testing in the United States: Final Report of the Task Force on Genetic Testing (9/97)
• Genetic Testing for Cystic Fibrosis Consensus Development Conference Statement [consensus.nih.gov] (4/97)
• NIH Workshop Statement - Reproductive Genetic Testing: Impact on Women (11/91)
• NIH Workshop Statement - Population Screening for the CF Gene (7/90)

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Genetic Discrimination and Health Insurance

• Genetic Information and the Workplace (1/98)
• NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and the Workplace (10/96)
• NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and Health Insurance (7/95)
• Insurance Task Force Report--Executive Summary (5/93)
• Genetic Information and Health Insurance - Report of the Task Force on Genetic Information and Insurance (5/93)

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Issues Related to the Conduct of Genetic Research

• Report of the First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research [nigms.nih.gov] (9/00)
• NCHGR/CDC Workshop on Informed Consent for Genetics Research Using Stored Tissue Samples(7/94)
• Protecting Human Research Subjects: 1993 OPRR IRB Guidebook Chapter on Human Genetic Research

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Underrepresented Minorities

• Summary of Grantees' Workshop on Strategies for Increasing the Number of Underrepresented Minorities Participating in Genomics and ELSI Research (11/01)
• Plan for Increasing the Number of Underrepresented Minorities Trained in Genomics and ELSI Research (2001)

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Specific Research Topics

• Studying interactions Among Social, Behavioral & Genetic Factors in Health (10/01)
• Cancer Genetic Studies Consortium (1998)
• Hereditary Hemochromatosis: Gene Discovery and Policy Meeting (3/97)

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Program Reviews

• The Role of ELSI Research & Policy Activities in the NHGRI Plan (10/02)
• A Review and Analysis of the ELSI Research Programs at NIH and DOE (ERPEG Final Report) (2/00)
• Report of the Joint NIH/DOE Committee to Evaluate the Ethical, Legal and Social Implications Program of the Human Genome Project (12/96)
• Review of the ELSI Program: 1990-1995 (3/96)

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Last Updated: July 31, 2009